Just thought I would let everyone know that we just got a call to say that all the paperwork has been completed for us to be leaving on Monday.
Flights are hopefully booked, if not, they will be first thing in the morning.
Now the only (obvious) potential issue is Aria’s health.
Please continue to pray for her health especially as the Dr’s address the blood clot/blood thinner issues.
Aria was such a good girl last night when they were taking her blood. They put cold spray on her hands and she watched calmly as they put the needle in again and again. Big bummer was they didn’t manage to hit a vein and they are going to have another go this morning with more senior staff.
Her little hands and arms are scarred and her veins are so tiny they are hard to get. There was only one guy, a gastro fellow a couple of years ago, who managed to hit the vein the first time. The rest struggle and sweat it out, one even had tears one time (no it wasn’t a girl doctor)
So another busy day. We are celebrating Ashie birthday today. His actual birthday is the 10th of Dec but we will be in Omaha then. Nana has Wiggles cups and plates and we are going to celebrate in the family rooms.
Aria is a superstar. She has been really good this admission. Doesn’t mean she doesn’t give the evil eye to the Doctors when they come in. Sometimes I feel really bad. But she was really good the other day during a tricky xray. She had to balance her body on this narrow hard foam plate that rested under her while she lay on the xray table. It looked really uncomfortable but she managed and said ‘hold my hand mummy’.
Very good girl
Good1 – The bank in the USÂ is checking the NZ govts credit rating to accept the credit note (promise of payment)Â and the contract is all ready to go once that is done.
Good2 – They have found out what is causing Aria’s puffiness. She has a blood clot in her lower back blocking the blood flow to a degree. Common with kids on TPN. So they have started her on blood thinners. The clot can be removed at transplant apparently. (note: I think this is bad news but trying to look on the bright side of life)
Bad1 – the blood thinners are sub cut injection in her thigh twice daily. She has a butterfly catheter in her thigh now and she isn’t that happy about it.
Bad2 - Hamish was supposed to come home for the night and Nana was going to stay but can’t now. Aria needs a blood test out of the vein which requires a luer at 8pm tonight. Super suckful for Aria. So Hamish needs to be there for her tonight particulary after the catheter.
NOT!
Had a hugely busy day yesterday as Hamish has said. Finally checked my emails at around 7pm only to be completely stunned at what was there.
The MoH are saying we can’t go until the contract with Omaha is signed. And when will it be signed? “Sorry can’t give a time frame, it is out of our hands”
ARE YOU KIDDING ME!?!?!?!?!?!?!?
I was wild. On Friday they said proceed with bookings you are all good to go. Now it is all up in the air. What on earth is stopping them sorting a three page contract, which they have written before for another patient going to Omaha, is beyond me. And there total lack of accountibility is shocking.
So I just lost the plot.
I feel like we have no voice. What do you do when your arguement with the Government!? And the people you deal with are their employees?
But I know we stand with the longest, strongest most powerful voice with us. Gods. But I cried last night asking how much more He will require of me.
So today I am checking out, apart from this blog. I have managed to lose my cellphone and I am not that sad about it. I feel pulled in hundred directions and and constantly being asked questions and having to make decisions about things I don’t care about.  So No email, no Cellphone, no Phone. Except for a code Hamish and I figured out so he can call me. Hamish is handling all coms with Starship and I am out. Cause he is a bloke and can handle plus it’s his job and he is happy to do it.
Tonight I guess we will have to decide whether to go back to our MP and call the reporter who was keen for our story. I so don’t have the energy but something needs to be done.
Aria had a good night for which I was thankful for. Her legs are a bit better and she lost 500 grams of wees overnight. And no morphine. She slept pretty well so that is good.
I just want to be treated better by our government and want my daughter to live. We need to get on a plane.
Aria’s still very much the same, still sore, still putting on weight, still well enough to travel… for the moment.
It was nice that today the Dr’s took a bit of action in the search for causes/solutions to the mysterious weight gain.
We wait with eager anticipation for tomorrows weight.
Please pray that Aria’s health would not be an obstacle to departure, and can you also pray that paperwork would also be sorted in time. There is some delay in getting contracts/payments sorted, this is another thing that may delay a Monday departure.
In other news, filming went pretty well. It appears Aria doesn’t hold any ambitions towards being in front of the camera, but there were a few nice moments that they managed to capture with her.
We are having a going away Thankgiving service and Afternoon Tea on Sunday afternoon
Covenant Presbyterian Church 77 Rogers Road Manurewa 2.30 – 4.30pm
Sorry to those I haven’t invited personally, I wish I had the time for personal invitations. Please come and say goodbye, we would love to see you!!!
We have somone to rent our house! Yippeee and our new renters were agreeable to our price so our mortgage payments will be fully covered while we are away. And it is people know well so that is great news!! A win win situation all around.
Aria had a slighty better night. She still has a lot of fluid on board. Her weight is up 2kgs from last week!! Still haven’t got a solid answer about this, really looking forward to consultant rounds today and getting it nailed down.
We are filming pretty much all day today so it is going to be a busy day.
I wish there were tasks I could pass on to other people. Lots are asking what they can do. Pretty much all of the stuff we have to do ourselves. Later when we leave there might be a packing and cleaning bee but will advise details later.
We are having a going away Thankgiving service and Afternoon Tea on Sunday afternoon
Covenant Presbyterian Church 77 Rogers Road Manurewa 2.30 – 4.30pm
Sorry to those I haven’t invited personally, I wish I had the time for personal invitations. Please come and say goodbye, we would love to see you!!!
